Week TwelveSunday, February 16, 2003(Click
here to go to Father's
thoughts)
Weight: 4 lbs. 14.5 oz. (2230 grams)
Feedings: 36 cc of Breast Milk (20 cal) and lipids
Head: 32 cmBailey is off the ventilator! She
was put on nasal CPAP (first picture) at 10:30 this morning and has been
doing well ever since. Her oxygen needs were at 27% for a
saturation of 98% until about 4:00 PM then they climbed to 40% for a
saturation of 93%. The general consensus as to why her oxygen
needs increased was due to the fact that she was more awake and more
active in the evening than she was during the day. Her Morphine
has been lowered to 0.6 ml/hour. As a result she is more aware of
her surroundings and able to stay awake for longer periods of time.
Regardless of her oxygen needs, Bailey will stay on nasal CPAP as long
as the partial pressure of CO2 in her blood stay in check and her
saturation stays above 87%.
Currently these numbers look better than they ever have.
Her CO2 is 49 and her saturation stay 94%. Her CO2 needs to stay
below 65.It is fun to hear Bailey grunt and make
noise when she moves. At first we kept asking the nurse what was
wrong with her. We wanted to know why she kept making noise.
Then it dawned on us that all babies make noises when they move.
We are just too used to Bailey not being able to make any noise.
It is strange to say it, but I love to hear her cry. And cry she
does! She already throws little tantrums when we put her down in
bed. She really likes to be held. The NICU might be creating
a monster that will only sleep if she is held (or sedated).Because the nasal CPAP pushes air down
Bailey's throat and not directly into the lungs, Bailey swallows a lot
of air. To help her fix this problem, the nurses keep her OG tube
(the one that goes down her throat and into her tummy that they use for
feedings) open so that Bailey can get rid of air by burping through the
tube. She burps a lot!Bailey's nasal CPAP pressure is set to
6. This the same as the CPAP on the vent. There are two ways
to attach the nasal CPAP to Bailey. The second picture below shows
a mask that fits over Bailey's nose. The third picture shows a
small two prong attachment that slips inside of Bailey's nose.
Both are a uncomfortable and the respiratory therapist will switch back
and forth between the two so that she doesn't develop any pressure
sores. The last two pictures are to show you how cute Bailey is.
The white stuff on the right side of her upper lip is some adhesive left
over form the tape that help her vent tube in. It should be gone
in a couple of days.

We are trying not to get too excited,
but we were told as we were leaving that Bailey would be tried on a
simple nasal cannula tomorrow. A nasal cannula does nothing but
provide Bailey with a higher concentration of oxygen than is found in
room air (room air is 21% oxygen). This would mean that all she
has to do is learn to feed and she could come home (and her parents need
to get on the ball and take the required infant CPR class). Our
spirits are high and we are very excited.Monday, February 17, 2003
Weight: 5 lbs. (2269 grams)
Feedings: 36 cc of Breast Milk (30 cal) + Dextrose
Ab. Girth: 29 cmBailey no longer resides in her private
room. She is now at bed 530 in the NICU.Bailey was taken off of nasal CPAP this
morning at 11:00 AM and was placed on a nasal cannula! She has
done very well all day with this change and we are very excited.
We can finally see her face (all at once). We can finally pick her
up and move her without the help of a nurse and a respiratory therapist.
We can finally standup, sit down and reposition her while we are holding
her without the risk of pulling her breathing tub out. It is a
welcome change.There is only one setting on the nasal
cannula machine (first picture). This setting controls the mixture
of oxygen (green tube) and air (yellow tube) that Bailey receives (clear
tube). The mixed air is passed through saline (clear container) to
give it some humidity before it reaches Bailey. Bailey's oxygen
needs have stayed right around 40% all day and her respiratory rate has
stayed around 40 breaths per minute. Her breath rate should stay
between 40 and 60 in order for her to stay on nasal cannula.The second picture below shows Bailey a
little while after being placed on a cannula. She was glad to get
rid of the nasal CPAP and sleeps much better now. She likes being
able to move her head freely for the first time since birth. The
third picture is of mom holding Bailey later in the evening. She
loves being held, and loves to keep her hands up by her face.If you haven't noticed from her
pictures, Bailey has no tubes in her mouth. Her oral feeding tube
(called an OG tube) has been moved to her nose (called an NG tube).
Her Morphine was also lowered to 0.5 ml/hour.Assuming that Bailey stays on a
cannula, the only hurdle left for her to come home is to learn how to
feed. This takes some babies days to learn and others take months.
They will try to get her to feed through her mouth in 2-3 days. We
will have a better idea of how quickly she will take to this once we
have tried it a few times. It sure would be nice for me to have a
job right now so that we would know where we will be for the next few
years. It would make us feel better prepared to have our daughter
home.

Tuesday, February 18, 2003
Weight: 5 lbs. 2.5 oz. (2335 grams)
Feedings: 36 cc of Breast Milk (30 cal) + DextroseBailey had an eventful day and suffered
a setback. At 7:30 AM Bailey got really upset. As a result
her breathing slowed and her heart rate dropped. In other words
she was suffering from
apnea. Her color changed. The nurse described her as
being dusky. The nurse explained to me that this meant she was
turning grey. Bailey's CO2 also started to rise above the safe
point. The episode lasted long enough that the respiratory
therapist ran to get a tracheotomy (breathing) tube so that she could be
reintubated and put back on the ventilator. Just as they
were about to intubate, Bailey finally took a breath. As a result,
her heart rate increased and her color returned. Unfortunately,
her CO2 did not drop back into the safe range. To combat this,
Bailey was put back on nasal CPAP.Bailey's nasal CPAP settings were set
to a flow of 7.5 l/min with 40% oxygen. This resulted in a
constant pressure of 5 cm of water. Bailey's oxygen was lowered
later in the evening to 30%. We will try the cannula again in a
few days.Bailey's Morphine was lowered to 0.3
ml/hour.Wednesday, February 19, 2003
Weight: 5 lbs. 2.5 oz. (2340 grams)
Feedings: 36 cc of Breast Milk (30 cal) + DextroseThere wasn't much of a change today.
I hope this isn't a sign that Bailey is going to get comfortable on the
nasal CPAP. For so long it seamed like Bailey got comfortable on
her vent and had no intentions of getting off. We, as parents, are
tired of the trips to the hospital. We just want to bring her
home. To have our family at home... together.Bailey's Morphine was weaned to 0.2
ml/hour. She is getting 40% oxygen with a saturation of 93%, CO2
of 55, and a respiratory rate of 50.Thursday, February 20, 2003
Weight: 5 lbs. 3 oz. (2360 grams)
Feedings: 36 cc of Breast Milk (30 cal) + DextroseNot much change in Bailey today.
Her Morphine was stopped which means the nurses will take her PIC line
out tomorrow and she will once again be line free.The respiratory therapist tried to but
Bailey back on a cannula today but it didn't go well. Bailey was
really congested so none of the oxygen from the cannula could get
through her nose. The doctor was worried that she might have RSV,
so they did some labs. Fortunately, they came back negative.
Bailey has a simple cold.The ophthalmologist came by today to do
a checkup on Bailey's eyes. Although Bailey was not impressed to
have someone pock around at her still sore eyes, the doctor was really
impressed with how well she has recovered.You can see a little video how active
Bailey is when she is awake by clicking
here. Sometimes we call Bailey our little rhinoceros because
the Nasal CPAP goes back over her head the way a horn would on a rhino.
Friday, February 21, 2003
Weight: 5 lbs. 5 oz. (2402 grams)
Feedings: 46 cc of Breast Milk (27 cal) + DextroseBailey had a rough night last night and
rough day today. She has been getting Reglan and Prevacid for
quite some time to help her with reflux. Reflux is a condition
where there is too much acid in the stomach. When this occurs, the
extra acid will come up and burn the throat. Unfortunately,
despite the drugs she has been receiving, Bailey had a really hard time
sleeping last night and all day today because of reflux.Bailey had been given Valium, Versed,
and a dose of Morphine to try and get her to calm down when the doctor
ordered her Morphine drip started again at 0.3 ml/hour. There were
two reasons for starting the drip. One reason was to help Bailey
with her eyes. When the ophthalmologist visited yesterday, he
mentioned that Bailey's eyes still looked very sore. The doctor
thought she might have been disconnected from the drip a little early.
The second reason was to help her deal with her reflux.The nurse put Bailey in a swing today
(her first time in a swing) and noticed that Bailey was able to sleep
better in the swing than she had slept all day. She stayed in the
swing for 3 hours. The nurse thought that because she was sitting
up the reflux wasn't bothering her as much. When Bailey was placed
back in bed, she was put in a "C" pillow so that she could remain in a
slightly inclined position while sleeping (the picture below).Bailey's oxygen was at 47% for most of
the day. This is a little higher than normal. It makes me
wonder why. I think it is due to her congested sinuses.Because the concern for Bailey to
retain fluids has lessened, the volume of her feedings has been
increased. Because she is getting more milk, the calorie level has
been reduced.

Saturday, February 22, 2003
Weight: 5 lbs. 6.5 oz. (2449 grams)
Feedings: 46 cc of Breast Milk (27 cal) + DextroseThere wasn't much of a change in Bailey
today. The respiratory therapist tried to put her back on a
cannula today at 10:00 AM. The cannula lasted for 2 hours, when
she was placed back on the nasal CPAP. She was working too hard to
try and breath and as a result her CO2 climbed to an unacceptable level.Bailey didn't have any trouble sleeping
in her "C" pillow today and her Morphine was lowered to 0.2 ml/hour.